Current Services Offered by Yorkshire’s Brain Tumour Charity (YBTC) Our support is for anyone impacted by a primary brain tumour across Yorkshire. This includes: • • • •
Patients (adults and children) diagnosed with a high or low grade primary brain tumour Carers including parents, partners, relatives or friends Family members who are living with, or have sadly lost, a loved one Children who are affected by a family diagnosis
FINANCIAL SUPPORT
ACCESS TO EMOTIONAL SUPPORT (TELEPHONE, EMAIL & ONLINE)
PSYCHOLOGICAL SUPPORT
SUPPORT GROUPS & PEER SUPPORT
BEREAVEMENT SUPPORT
SUPPORTING CLINICAL TEAMS We offer support directly to the CNS Teams in the region in the three key treatment hospitals, for example supporting away days or education days and offering clinical supervision. We are also able to provide patient folders, leaflets, business cards, banners, leaflet holders and other promotional items as required. L52 We offer support to the Children’s Neurosurgery Ward. L52 at Leeds Children’s Hospital. This is as a carry on from the work previously undertaken by Will’s Way. For all low-grade paediatric patients we are now referred to by the team as part of the agreed care pathway for ongoing/follow up support.
PATIENT ADVISORY GROUP We have an active Patient Advisory Group who represent the views and experiences of people affected by a brain tumours. They get involved in a number of ways including: • • • • •
Giving feedback on proposed clinical trials and/or designs for researchers Online surveys or polls Focus groups Reading new patient information and giving feedback How YBTC develop our services and their ideas
This scheme enables those we support to feel that they are giving back to help improve the experience for people affected by a brain tumour in the future. Our Patient Advisory Group enables us to further support researchers when undertaking Patient and Public Involvement (PPI) groups.